This is a blog about my family; Michele (I'm the mom), Dad Josh, big sister Zoey Lynn and our new addition Riley Rose. Riley was born with 22q11 Deletion Syndrome aka DiGeorge's Syndrome which we are finding to be a daily challenge
Sunday, January 9, 2011
1-9-11 7:45am
So last night wasn't as bad as the night before. We tried to move Riley down to 25% O2 from 30% around 9pm last night and she did well until about 11ish - then she started to desat (her O2 went below 80 a bunch, when they want her above 85 when she sleeps). We would wake her up and her levels would go back up to the 90s. So we tried putting it back up to 30% O2 and put a roll under the back of her neck - this way we open up her airway for her a little more. Well she only had a couple of desat incidents in the night, but the nurses came in and fixed her head and did a little suction and she would come right back above 85 - mostly 90s actually. So that is good. Then this morning her IV started to leak - her nurses asked the doctors if they had to stick her again as she is a tough stick and her heart rate obviously goes through the roof when they do this. Well they looked at her C-Reactive Protein levels (remember if these are elevated it means there is inflammation somewhere in her body and they have been elevated this whole week - which means sickness/virus/infect/something wrong) from blood work this morning and they were down from yesterday - so no more IV medicine. We will just giver antibiodics through her feeding tube now - less effective, but better then sticking her again. So we are moving in a nice direction today - which is a good feeling.
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